My Baby Girl

August 10, 2002 - October 27, 2012

 

We lost our baby girl Pearl this morning.  I had my baby for 10 years.  In those years she was plagued with colitis and Addison's disease.  She was not feeling well last night as she had her required rabies shot earlier that day.  She had thrown up her dinner, but with her sensitive stomach and her Addison's this wasn't unusual.  Sometimes she just needs a day or so to get back to herself.  This morning she still was not herself.  I held her for about an hour and when I went to put her down she could not stand.  Mom picked us up and we all took Pearl to her doctor.  I thought my baby was dehydrated and needed an IV.  Within 10 minutes of being there my Pearl went into cadiac arrest and after several attempts to save her, she passed on.  I held my little girl for as long as I could.  I am still in shock that I did not bring her home.  My heart is aching right now.

 

I lost my Bella in 2006 to cancer.  I knew she was going to die but when that time came it was still so difficult.  With my Pearl, there was no warning.  I mean I knew she had this disease but I was so diligent with her care that I never expected this....not today.  Every month we went in to get her DOCP shot and people from her doctor's office, from the billing department, would ask they be notified when Pearl was coming in so they could see her.  Everyone loved her and her doctor referred to her as a "Rock Star."  Many tears are being shed tonight for my baby.

 

I still have my Sophie and she is comforting me tonight as Mom took Jack today.  He knows Pearl is in heaven with Bella.  I'm sure he'll have more questions when he sees that Pearl is not coming home. 

 

I am so so sad tonight.  My heart is broken for my little Pearly.  I hope she knows how much she was loved and how much love she gave to so many. 

 

Pearl, you are healthy now.  No more medicine, no more shots, no more pain.  You are missed my sweet.  I will hold you in my heart forever.  I Love You!

 

      

Grievence Letter To My Insurance Company

During this past year although I got pre-authorization for my September surgery, my insurance company felt a micro-surgeon was not needed to for my procedure, which is ridiculous.  They were also standing on some other petty issues to NOT pay the proper precentage allotted to me as per my contract with Anthem.  Although my doctors were paid up front, in cash, they were assisting me in my efforts for payment.  I believe this is why so many doctors no longer take insurance.  Battling the insurance companies is tiring and tedious.  I was asked to write a patient impact letter.  It took me quite awhile to do this, but here it is.  I'm happy to say that after another 30-day review, they have seen the errors of their ways.  They are reversing their initial findings and I'm hoping to receive payments very soon.  This was about money and principle.  It is so unfair insurance companies run patients ragged.  It's a constant fight.  But I think I won.  Anybody needing to write to their insurance company, please feel free to use my letter as an example.  For me, this is one big door I can now close.     

 

LETTER To ANTHEM on 8/21/12

 

ATTN: Member Grievance

             Member Appeals Department- 2nd Level Independent Review

Date Of Service: September 12, 2011

Procedure: Bilateral Prophylactic Mastectomy with DIEP Flap

To Whom It May Concern,

I am a 43 year old single mother to a 3 year old boy.  I found out I was BRCA2 positive in November 2010 when my son was just 17 months old.  There is a strong family history of breast cancer on both sides of my family but my BRCA gene mutation comes from my paternal side. 

At 40 years old I became the sole parent to my newborn son.  Although my doctors were aware of my family cancer history it was after my son was born, my new OBGYN suggested I take the simple blood test for the BRCA gene.   I didn’t even know there was such a gene let alone a test.  I was still in a state of bliss being a new mom and I didn’t really want to mess with that, so I waited quite awhile before I agreed to take the test.  I NEVER thought how my life and my son’s life would be tremendously impacted by the results.  I was POSITIVE for the breast and ovarian cancer gene.

All of a sudden I was sitting with a genetic counselor and she’s handing me information for a mastectomy and hysterectomy and all I wanted to do was scream, “I don’t have cancer.”  Not yet anyway.   I met with my internist in Los Angeles, although I live an hour south in Orange County, and he immediately had me meet with his colleagues and specialists.  I met with Dr. Jay Orringer M.D., F.A.C.S. and Dr. Jay Granzow M.D., M.P.H., both highly skilled Board Certified Plastic Surgeons and highly trained in advanced methods of breast reconstruction.   I had a crash course in prophylactic mastectomy and immediate reconstruction using implants or the much more involved DIEP flap.

Going into this I knew I would need a “team” of doctors.  As much as I appreciated the expedience with which I was able to meet with the LA doctors, I live an hour away and knew I had to explore other options.  I met with 13 or so doctors total.  This included an oncologist, a cardiologist, gastroenterologist, and several other surgeons and plastic surgeons.  Not only was it important for me to like all the doctors involved, I had to make sure they too could work with each other.  I met with doctors from Hoag Hospital as well as St. Joseph’s Hospital, both in Orange County.  Over and over again I was told I was a great candidate for the DIEP flap but no surgeons I met with were skilled in the specialized DIEP procedure (19364-22-62).  As you know it is a very delicate and specialized surgery that requires microsurgical transplant of tissue and blood vessels.  After much thought and consideration to my personal situation, I chose to have a bilateral prophylactic mastectomy with DIEP flap with the team of LA doctors that I had consulted with.  I believe I absolutely did my homework and tirelessly consulted with many doctors, thus choosing my LA Team.  This does not mean I was emotionally ready though.  My surgery was originally scheduled for February 2011 and I postponed it to September 12, 2011. 

As a woman, making the decision to remove otherwise healthy tissue is very daunting.  I was absolutely going ahead with this procedure, as it is my right and choice to do so for preventative reasons.  If I were to get breast cancer and perhaps die who would raise my son?  There is no father side of the family for him to go to.  I made the best choice for me and my son.  I wanted my son to be young enough that he would have no memory of this nightmare I was living.  I also wanted to choose the best procedure that would NOT have me in and out of operating rooms over the course of my life, like repeatedly fixing implants due to leaking or encapsulation, or other issues that may arise.  Choosing mastectomy with DIEP flap was a very emotional decision to for me.  I would have to be in the hands of the most skilled surgeons who perform this procedure thousands of times.  

My surgery on September 12, 2011 was roughly 18 and ½ hours.  Dr. Robert Cole was my surgeon who performed the mastectomy (about 3-4 hours) and the rest of that day and night Dr. Orringer AND Dr. Granzow worked simultaneously on me as co-surgeons.  There was no assistant.  It was an emotionally draining day for my family and exhausting for these two highly qualified surgeons.  This is how the surgery was PRE-AUTHORIZED and I expect it to be paid accordingly.  I understand that I went out of network and my contract with Anthem clearly states the percentages paid when doing so.  Each doctor was paid out of pocket $34,000.  Each doctor billed $32,400.  I have received back $11,329.79 total for Dr. Orringer’s services.  I expect the same for Dr. Granzow.  Thus far, I have received just over $2000 for Dr. Granzow and that is mostly from doctor visits and other procedures he required from me.  This is my grievance as I am almost at my one year anniversary and there has been inadequate funds refunded.  In all actuality it is my opinion that this complex surgery should have been reimbursed at a much higher rate, even 100% reimbursement should be allowed since there was not an in-network doctor(s) in my area.  St. John’s and my anesthesiologist WERE in network facility.  Does Anthem take in consideration that it was necessary for me to go out of network for my surgeons and yet I DID utilize my network as much as possible?  Much more should be paid as the DIEP flap (19364-22-62) requires TWO microsurgical co-surgeons.  Because I could not find this in my home town, it was necessary to drive one hour to LA where Dr. Orringer AND Dr. Granzow ended up being my surgeons.  Going out of network is really not the issue.  For me, there was no other option.  Might I add, when one is BRCA positive it does not go away with a mastectomy or hysterectomy, which I have yet to do.  I have to be constantly monitored for the rest of my life as I am susceptible to many other cancers.  For this, I have continued with other surgeries and procedures.  I have continued with ultrasounds and CA-125 every 6 months, yearly colonoscopies and yearly esophageal ultrasound to monitor my pancreas.  This takes an emotional toll on me and my family, especially when I cannot fully be available to my son, as I am his primary and sole caregiver.  All of these medical issues and procedures are draining.  I have done my “due diligence” in every aspect of this journey.  I have done everything that has been asked of me by each and every doctor, as well as you, my insurance company.  I pay my premiums, my bills are paid in full and I get pre-authorization.  One of my doctors told me that I am her most proactive patient.  So why am I being penalized?  It’s either do this or get cancer.  Which one do you want to pay for?  What would you do?

I demand an Independent Board Certified Plastic and Reconstructive micro-surgeon review this appeal.  It is my opinion that a qualified person(s) are the only one’s that will have a greater understanding of the events on September 12, 2011.  Please review my records and see for yourself which doctors I met with, what procedures and surgeries I have had done to date, what has been reimbursed and what is still pending.  You will also find letters from my surgeons written on my behalf.  I look forward to hearing back from you.

Sincerely,

 

Janeen Straub